Today I found the Spoon Theory. And everything stopped. I had an Oprah 'Aha Moment'!!
It is simple story telling how a woman with Lupus explains her disease to her healthy friend. She uses spoons to describe how each and every day, she only has a limited amount of energy, and how she has to choose how to use it.
For me personally it has been difficult to explain the full extent of my illness. I don't have a cane, a wheelchair, or anything blatantly obvious. My scar hides behind the comfort of my shirt or dress. When I am sick, it is usually in the privacy of a bathroom. And who really likes to talk about that??
If I am going away, I have to rest constantly beforehand. If I don't, I pay for it in the weeks after my return. I am still trying to catchup from my trip away at Christmas, a month on.
I am still trying to work out my work/life balance. Right now, I do some part time, unpaid PR/secretary work for a few not-for-profit organisations. I babysit one or two days a week, which I absolutely love. With the PR/Secretary work, I can do it from home, from the comfort of my bed if I have to. The babysitting stuff constitutes what amounts to my outings. I usually do my shopping with either one of both of the kids and it works for me.
Combining babysitting with shopping also has a beneficial, somewhat unexpected side effect: it helps me with my panic attacks! I find I can deal with them quite well when I have something to focus on, and have something to interact with. And if it ever gets too much I just go and put the kids in the playroom for half an hour and watch them play: always a distracting activity!!
With a chronic illness like Crohns, it is a hard thing to find balance. If it isn't one thing, it is another. So please, be patient with me, friends and family. I am trying to keep myself well, not work myself into the ground and end up in hospital. Patience, kindness and understanding. It is all I want.